Just saying hello..

Just like to say hello and thank you for having us…
Only fairly recent for us, my wifes Mother has got dementia and was unable to look after herself so she has come to live with us…been here about 5 months and she is steadily getting worse…
You all deserve a medal, we didn’t realise how difficult it would be…

Hi Lynn and welcome
You’ve obviously already been looking around the forum. Are there any burning questions?


Hi Lynn, welcome to the forum.

Yes, caring full time is so, so difficult. It’s vital you delegate as much as possible. Top of my list, a dishwasher and a tumble dryer, then streamlining the house.

Sadly, you may find you regret the decision to bring your MIL to live with you…but if it works (just!) for now, that is great. But it WILL get worse, because, grimly, dementia is a terminal condition - it will, eventually, shut down her circulation etc, and then the end will come (in years). Unless of course ‘something else’ (stroke, heart attack) takes her first.

I say this not to be depressing, but grimly realistic, so you can ‘plan ahead’ as you really do have to start doing. At some point the dementia will make her doubly incontinent (starting by ‘losing the cues’ as to when she needs to ‘go’) and she will need nappies and constant changing (think ‘big baby’, sigh), and then she is likely to lose the ability to speak, and then the ability to walk (think hoists, wheelchairs, etc). It is truly a grim, grim disease…

So, sadly, you DO need to look that far ahead, and think and plan what is going to happen. Most essentially from a financial point of view (in that money will determine your choices, and the long term impact on you as a couple, etc).

So, a ‘financial audit’ is necessary. As you may already know, IF she needs to go into residential care, any money she has will have to be contributed (unless she has only £14,500)(between that sum and £23,500 the council pay ‘partial fees’). Abve £23,500 shge has to pay ALL her own fees (and if she has owned a property, or still does, that has to be sold.) (My MIL went through the ENTIRE value of her flat that was sold when she went into a care home).

I must apologise…when I looked there was no replies…I had no notifications and just checked and would like to thank you for the information and welcome.
Wow…so much to ask.

Hi - just to clarify - are you Lynn or Gary? (Or, maybe, in these LGTB etc days, both?!)

Overall, it might be helpful for you to keep a ‘diary’ of your MIL, so you can track her decline. As I warned, at some point, unless something else ‘carries her off’, you are unlikely to be able to see this through to the bitter and horrible end that is death from dementia… (can’t really say otherwise, sigh).

So, like I say, you do need to ‘plan ahead’.

The one ‘consolation’ perhaps of if she does last long enough to reach the point where she will NEED a nursing home, she won’t actually know anything about it. My friend recently ‘threw in the towel’ on looking after her father-with-dementia at home as she had been doing for SIX YEARS (!), and he went into a specialist home for EMI (elderly mentally infirm). She takes him out for meals (he’s still able to walk, but doesn’t talk or even feed himself), but he really has no idea who she is, or where they are, or where he is when she takes him back to the home. So he is not in the least ‘distressed’ by not being at home.

In the meantime, your wife should make the very MOST of her mum ‘while she is still her mum’, if you see what I mean. NOW is the time to go through old photos, take new ones, get as much ‘family history’ from her while she can still remember any of it (if she still can, alas), and generally ‘keep company’ with her while her mum knows who she is. One day you’ll look back to now and realise how ‘good’ her mind still was. (I already do this with my MIL, who died recently, ‘in a sad sad sad world of her own’…)

Thank you…and sorry for the confusion ……Im Gary…my wife(who joined this group) is Lynn…we are looking after Lynns mom who is 89 in January 2019…to be honest it is becoming a nightmare for us both…we are both mid 60s…I am recently retired and Lynn works Mon-Tues-Wednesday so I look after MIL those days………when she came to live with us in June she was struggling to cope at her own house…she couldn’t work the cooker and even had difficulty making a cup of tea…she is almost blind which doesent help…when she first came to us she was not too bad…but over the weeks she started waking us up at 1am or 2am either using her commode as a walking frame or shouting ‘hello’ or ‘help’…Lynn was going to work some days with only 2 hours sleep…so now Lynn has to sleep with her.

We have had an assessment done and they have said that it is probably the start of Vascular Dementia.

Did mum own or rent her house? This is really important when considering the future options.

Gary it is then! :slight_smile:

As BB says, the first issue to work out your MIL’s finances, as that will determine your options for her future care.

If she is ‘worth’ in total more than £23,500 she has to pay for her own residential care (if that ‘worth’ is in property etc) and for her own ‘coming in carers’ (if that ‘worth’ is in cash).

If she gave you and your wife any of her money, other than for her ‘board and lodging’, then the council would regard it as deliberate deprivation of assets and ‘want it back’ to pay for her care.

What do YOU really want to happen now? It sounds like you are (both) reaching the end of your tether, and really only a care home will be able to cope with your MIL?

MIL does still owns her house…and its very unlikely she will ever go back there…

OK, so if she does go into a home, the value of the house will have to be ‘realised’ - either sold to pay her care home fees out of the proceeds, or, perhaps, simply that the council will put a charge on it, like a mortgage, while paying her care home fees, but then once she has died, will reclaim whatever they spent on her.

No escape from that - unless you go on looking after her yourself.

Please do NOT fall into the worst decision, which is to START looking after her, giving up years of your life, only to ‘crack’ under the strain and THEN ‘put her into a care home’…and STILL have to sell the house to pay for care!

Remember, once she is down to £23,500 ‘total worth’, the council start (co)paying. When she has nothing left but £14,500 they pay ALL her fees.

As ever, you are ‘gambling’ on how long she will live. If she lives a LONG time then she will ‘outlive’ the value of her house, and the council will pay for the rest of her life. If she lives a very SHORT time in care, then you will maybe lose say £40-50k of the value of her house (allow £100 A DAY at the very LEAST for care home costs!) (and dont’ expect the NHS to pick up ANY of the bill that is ANYTHIGN to do with dementia - the NHS sees dementia as a ‘social’ issue, NOT a ‘medical’ one)(they have to, or it would financially cripple the NHS!).

The worst is if she lives the ‘median’ term, so that you end up with her spending ALL the value of her house and then promptly dying the moment she is ‘broke’…so the only one who ‘benefits’ is the council who then, hurrah for them!, don’t have to fork out a bean for her.

It’s a costly business, developiong dementia…it boils down to family making the decision whether they want their lives (ie, not caring for their parents) or to inherit (if there is anything to inherit). You don’t get both! Not if the parents ‘inconveniently’ (!!!) continue to live for years and years…

Sorry to be vicious and blunt about it, but that’s the way it is. Dementia is absolutely ‘toxic’…and not just to its victim, the patient, but to their families, and to the state, as well.

Hopefully you have Power of Attorney for mums finances?
If not you will not be able to spend her money on her care without going to the Court of Protection, which is protracted and costly

Although what Jenny said is true about the house, you might prefer to spend any savings/pensions/investments she has first.

Agreed. Also make sure she is claiming Attendance Allowance, and receive the NHS Funded Nursing Care Allowance, I think this is about £150 a week now. Also I think you can get the Council Tax waived for the first 6 months after someone goes into care.

Oh yes, definitely spend all the money first, before selling her bungalow.

And, yes, good point about the ‘access’ to her money to spend on her care.

Ironically, of course, so many are averse (understandably!) to granting PoA while they still feel themselves ‘with it’ but then by the time they are most definitely NOT with it, it’s too late.

This happened with my MIL. There was ‘no time’ for PoA for me/her son to be set up, but I ‘just’ got her (quite willingly, obviously) to agree to a joint bank account with me, which the bank were happy to do - the official opening it with us clearly had no problem with her being compos mentis and knowing her own mind to open the account - but anything more than that was impossible. She had ‘gone’ too far into dementia after that. To this day she has an account that I can’t find out what is in it till I do probate now (she died this autumn).

I had to be ‘grateful’ she did die when she did, in that financial respect, as I was facing a ‘battle royal’ with the council over who would continue to pay her care home fees once her joint account money was gone. As Mrs A warns, my only option would have been the much more onerous Court of Protection - expensive in itself, lengthy AND my understanding was that I myself would have to put down a substantial ‘bond’ to guarantee I was not misspending her money! I was all set to ‘abandon’ her to the council and let THEM sort it all out - which they would have done by dumping it on a solicitor I assume, who also would have charged HIS fees on her estate, thus depleting it even more…

So, be warned - having a PoA in place is much easier. BUT, it is less quick than it used to be and of course, your MIL will have to agree with it. And, as I said, understandably, most of us are NOT keen to’ hand over our money’ to our children while we feel WE are still capable of managing it (even if we’re not!)